Day 85 of 99 Days to FASDay: Gaps in Understanding FASD

2018 Update:

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In an effort to bring more clarity and information surrounding awareness, prevention and addressing Fetal Alcohol Spectrum Disorder, an additional graphic was created. The information that supports Day 85 (for 2018) can be found on on this blog post:  What do we need to address FASD.

The information below, from 2017, still relevant, looks at difficulties addressing FASD.

Day 85 of 99 Days to FASDay

The above quote is from a very interesting report created by The FrameWorks Institute (Washington, D.C.) from interviews conducted in Manitoba (Canada) with members of the public and FASD experts to discover the overlaps and gaps between expert and public understandings about FASD.

Due to strict copyright rules from the FrameWorks Institute, other than when sharing a small quote (as above), approval is required to share parts of the Report.  I hope to obtain approval to share more information in future posts, so until then I am sharing parts of two articles about the Report written by Dr. Marnie Makela. Visit the CanFASD blog for the full articles as I’ve only copied a few highlights from Dr. Makela’s June and August articles.

In the CanFASD articles, Dr. Makela writes:

The authors identified two key issues that make it challenging for policymakers and service providers to cultivate public support for FASD initiatives:

  1. The narrow understanding of FASD as a problem that results from a woman’s lack of willpower and selfish decisions limits people’s thinking on what the province can do to make meaningful progress on the issue of FASD.
  2. The public’s understanding of people with FASD as having Forever Damaged Minds blocks productive thinking about how wraparound social services could help people lead more fulfilling lives.

Identified Gaps between expert and public understanding of:

CAUSES OF FASD:

Public believes strongly that a woman’s individual choice to consume alcohol is the only relevant cause of FASD.

Experts focus on contextual factors and social determinants (e.g., the environment in which a woman lives, her past experiences of trauma, chronic stress, discrimination, etc.) and biological factors (e.g., a woman’s metabolism, sensitivity to alcohol, etc.)

FETAL RESPONSE TO ALCOHOL

Public believes that the effect of alcohol on a fetus can be explained simply: a woman consumes alcohol, a fetus absorbs it, and because the fetus is so small, the effects are substantial and devastating. When the public is uncertain about why some mothers can have a drink or two during pregnancy without any ill effects, they default to “fate” as their explanation.

Experts know that whether alcohol has a greater or lesser effect on the fetus depends on many factors, including the biology of the pregnant woman and her susceptibility to alcohol, the biology of the fetus, and the woman’s social environment (e.g., experiences of trauma or chronic stress).

BRAINS:

Public believes that once anything disrupts normal development, the damage is done, and nothing can change.

Experts know that cognitive systems show great plasticity in the early phases of development and throughout childhood.

PRE-PREGNANCY EXPERIENCES:

Public reasons that once a woman becomes pregnant, her identity changes so fundamentally that she should be able to stop drinking or cease any behaviour that may be harmful to the fetus.

Experts understand that a woman’s challenges (e.g., addiction) do not simply disappear when she becomes pregnant.

COMMUNITIES AFFECTED BY FASD:

Public thinks of FASD as largely the problem of communities living in poverty, especially Indigenous communities.

Experts understand that, given Manitoba’s drinking culture, FASD is the possible outcome of any pregnancy, regardless of socioeconomic status, cultural background, and race and ethnicity.

STIGMA:

Public believe that stigma can, in fact, be a useful tool to force women to make better choices regarding alcohol use.

Experts stress that it is crucial that women who consume alcohol while pregnant be accepted without judgment when they seek supports.

SOLUTIONS:

Public is highly fatalistic when thinking about programs and policies that might improve life for people with FASD and prevent future cases.

Experts believe that people with FASD can lead productive and fulfilling lives and, importantly, that prevention is possible.

PREVENTION:

Public believes that FASD is a matter of women’s individual choices and the only preventive approach that will work is to restrict those choices, either directly via policies and law or indirectly through stigma. The public believes that stigma and shame are important tools to pressure women into choosing not to drink during pregnancy.

Experts believe that to prevent FASD, it is crucial for all women to be able to access accepting, non-judgmental, and culturally competent services. Experts are adamant that stigma and shame are corrosive, counterproductive, and inhumane. Punitive practices only make it more difficult for women to get help and for diagnoses to be made.

See Day 41 of 99 Days to FASDay for information about the International Charter on the Prevention of FASD.

FASD IN INDIGENOUS COMMUNITIES

Public believes that society must address discrimination and racism, but sees these goals as only tangentially related to FASD prevention.

Experts explain that, to address FASD, society must address colonization and systemic racism to repair the cultural, social, and economic harm inflicted on Indigenous communities.

Suggested Communication Strategies to Reframe perception of FASD

Dr. Makela summarizes some of the communication strategies suggested in the FrameWorks Report for helping to reframe the way the public thinks about FASD. Be sure to visit her blog post to read more about these strategies.

  1. Reframe FASD as a contextual, not individual, issue by promoting 3 values: interdependence, ingenuity, and pragmatism.
  2. Communicators should put forward a definition of FASD—in educational materials, in schools, in doctors’ offices, on websites—that describes FASD as a disorder whose causes are biological and social.
  3. Communicators should clearly explain how FASD is directly related to the social environment by using explanatory chains.
  4. Always tell “wide-angle” stories.
  5. Cue and expand productive cultural models to shift thinking away from individual blame and towards contextual factors.
  6. Counter fatalism with detailed descriptions of effective solutions.
  7. Explain how trauma experienced by Indigenous communities contributes to FASD.
  8. Explain how not addressing FASD on a large scale stunts society’s growth.

There certainly was some really good information in this Report and I encourage you to visit the CanFASD blog (links above) to review the articles as there is a lot more information than provided above, as well as a link to the Report. Although this was a study in Manitoba, I feel perceptions would be similar in many communities.

If you want to shift your thinking and reframe how you speak about FASD, don’t forget Day 21 of 99 Days to FASDay to Day 24 looked at The Language Guide (created by the Manitoba FASD Coalition).

If you are interested in intervention mapping I found a report called: Fetal Alcohol Spectrum Disorders (FASD): an Approach to Effective Prevention

FASD affects all communities and is an underestimated problem worldwide. Programs based on proven principles of behavior change are warranted. Program developers can use pre-existing protocols and strategies from evidence-based practice, such as Intervention Mapping. Developers who plan their preventive programs in a systematic and evidence-based manner increase the chances of success in reducing prenatal alcohol exposure and FASD.

Come back for Day 86 of 99 Days to FASDay as we continue to explore FASD messages.

 

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